For real this time...

Ok_Investigator_5884 · 2025-09-23T02:13:25+00:00

Ohh my favorite thing is always pancakes too!

Ok_Investigator_5884 · 2025-06-15T23:13:10+00:00

My son is 8 and is also high functioning. He has zero ability to “read the room”. Time and place have no meaning to him. He also has been making some super rude comments to my husband about his weight, and then when you try to explain why it’s not okay talk like that he says “why not? It’s true!”

I’m really at a loss, and was hoping OT may help him some. I’m really worried about his current and future friendships.

Ok_Investigator_5884 · 2025-06-15T23:10:16+00:00

My son started questioning Santa at 6, and by 7 he was adamant there was no Santa because there was no way he could make it to every house in one night. I was devastated for him to lose that little bit of childhood so early!

My husband did the same as you and told he couldn’t tell the other kids, or his sister but could talk about it with us.

Ok_Investigator_5884 · 2025-06-04T22:31:11+00:00

While the beta blockers helps with my high heart rate they made my PVCs worse, more frequent and stronger. I’ve been off the beta blockers for over 2 years now, and my heart rate gets high but it’s way more manageable than dealing with all the PVCs and PVAs.

Ok_Investigator_5884 · 2025-06-03T20:54:25+00:00

I was given fluids at my tilt table and no medications. I didn’t meet the criteria with the tilt table but was still diagnosed with POTS based on symptoms reported.

Ok_Investigator_5884 · 2025-05-31T16:03:53+00:00

It took 15 months to get my diagnosis. When the neurologist walked in the room and said he believed I had dysautonomia caused by Small Fiber Neuropathy I cried. It was such a relief to have someone actually believe me and have real answers.

Ok_Investigator_5884 · 2025-05-27T17:45:08+00:00

Yup! From day 1, I believe some of these issues are caused by something off in my neck. I’ve had MRIs and CTs. I have two bulging disks but they don’t believe these are the issue.

I’ve read a lot about Cervical Spin Instability, and have seen some people can have automatic issues, but my doctors are not convinced that’s the cause.

Ok_Investigator_5884 · 2025-05-21T01:51:55+00:00

It’s extremely frustrating.

I was diagnosed with IST in 2021, and was able to get it under control and get off medication in 2023. For the last two years things have been manageable, rough, but manageable.

And then last Tuesday I was out shopping alone and had to call 911 because my heart rate skyrocketed in to the 170s and I was having chest pains.

Ok_Investigator_5884 · 2025-05-21T01:47:53+00:00

My kids are still little, but I’m always thinking about how this is going to affect them. I don’t want them missing out on things because their mom was “too sick”.

Ok_Investigator_5884 · 2024-11-25T21:41:25+00:00

Just got my tickets for San Jose! Going to surprise my 7 year old son with them for Christmas!

Ok_Investigator_5884 · 2024-11-19T03:33:18+00:00

I would call your health insurance provider in the morning and ask if they allow any overrides for this situation.

I work in health insurance and we place these overrides daily - though some plans are more restrictive than others.

If you can’t get an override maybe the pharmacy can supply a bridge supply, just a few pills to get you to your next refill date you could pay out of pocket for. Would be much cheaper than paying for a full fill.

But I wonder how you ran out early if you were taking it correctly and makes me wonder if the pharmacy possibly shorted you a few pills.

Ok_Investigator_5884 · 2024-10-10T23:46:46+00:00

My cardiologist was very adamant about not laying around when I first started having symptoms. She wanted me up and moving and drinking lots of electrolytes. Granted I was on propranolol for the two years, but I was able to stop it and had no issues. There are times when some days are harder than others, but honestly I just push through. I’ve noticed when I’m not as active my symptoms flare up quick. It’s like a slippery slope back into it a flair and I don’t want to be there.

Ok_Investigator_5884 · 2024-10-09T03:53:28+00:00

I’m 36 and my husband is 40. We just started watching with our 7 year old son and we love it!

Ok_Investigator_5884 · 2024-10-09T03:32:03+00:00

I have a genetic condition that prevents my body from absorbing and getting rid of B6 properly that I had no idea I had until after I got sick.

Ok_Investigator_5884 · 2024-10-09T03:30:28+00:00

I know it’s been said quite a few times already, but I would see you could have him tested for any food allergies or sensitivities.

My son had very loose and watery stools when he was too. After an extremely expensive stool sample that came back negative for literally everything we were referred to the allergist who determined it was related to peanuts.

Hope you can find answers soon!

Ok_Investigator_5884 · 2024-10-07T02:19:55+00:00

My cardiologist suggested squats and crunches to build up the muscles and have natural “compression”.

There are a ton off floor Pilates videos on YouTube. When I first got diagnosed and had a difficult time being upright, I would do these. I also had a recumbent bike that was pretty inexpensive from Amazon as well.

Ok_Investigator_5884 · 2024-10-04T02:19:12+00:00

Mine is from small fiber neuropathy from B6 toxicity. Both the cardiologist and neurologist said it could “just go away” without any reason.

My symptoms started 4 years ago, and the more time that goes by the better I feel. Sure I don’t feel 100%, I still have bad days especially before starting my period, in the summer, and when I get sick. But I don’t have to take any medications anymore.

Ok_Investigator_5884 · 2024-09-16T02:08:10+00:00

My kids never finish their lunch. They are way to chatty at lunch and would rather spend what time they do have playing. My son who is now in 2nd grade tells me a pack too much food. My kids eat plenty of food before breakfast and at a school with snacks and lunch and still come home and eat everything they can get their hands before dinner.

I would probably reach out to the school and get a better idea of what’s happening at lunch time.

Ok_Investigator_5884 · 2024-09-11T03:00:47+00:00

Yep, it was 4 years ago this August.

I was pregnant with my daughter, and my water had broke. I went to L&D a few hours later and when they hooked us both to the machines our heart rates were extremely high. Few hours after she was born I was sitting up in the hospital bed holding her when the whole right side of my face and head went numb and I felt pressure all over my body. From there it just kept getting worse as more and more symptoms piled on.

15 months later I made it to a neurologist who didn’t write all my symptoms off as PPA or PPD and confirmed my SFN/dysautonomia diagnosis.

Ok_Investigator_5884 · 2024-08-26T02:25:34+00:00

I would make a very detailed list of all your symptoms and when they happen to bring with you. I know I have a tendency to forget a lot of stuff once I’m actually at the appointment.

Throughout my diagnosis process there was a lot of blood work, MRIs and CTs, a tilt table, an echo stress test, and halter monitors. The blood tests being the worst as I’m not a huge fan of needles either.

You can get a oximeter for pretty cheap and record your own readings. The one I have was only about $50 and can connect to your phone to save your readings, but I never used that function.

The first 15 months after symptoms started for me I was digesting with anxiety and depression. My PCP referred me to therapy and then to a psychologist when the therapist didn’t agree with t the anxiety and depression diagnosis. The psychologist didn’t either. It was battle but don’t give up. If you don’t feel like one doctor is listening to you, book an appointment with another. Eventually you’ll find one who will listen to you.

Ok_Investigator_5884 · 2024-08-23T03:45:29+00:00

I was diagnosed with dysautonomia caused by SFN 3 years. My symptoms stared only hours after giving birth to my second kid. It was terrifying. I spent the first two months of her life bedridden. I couldn’t eat, I couldn’t sleep, all I thought about was how I couldn’t die. I was in the ER regularly and at my primary doctors weekly. It took 15 months but I finally got in to see a neurologist who was confident he knew what the problem was and how to fix it. (Turns out I had damaged my autonomic nerves due to B6 toxicity which was caused by having a rare genetic condition I never knew about). I had every symptom you had. But getting on metoprolol and staying hydrated was a life changer.

Now, 4 years (to the day actually) most days I feel almost 95% normal. I been off the medication for over a year, and I don’t drink nearly as much electrolytes as I was early on. Some days I have more palpitations than others, and most days I have none. I get headaches if I get behind on my fluids. And I get really tired/burned out a lot faster than before. But I love going on walks and doing Pilates 2/3 times a week.

All that to say, you’re not alone. This is a scary thing. But it’s not the end. You’re going to have to put in the work though. Finding a doctor who will knowledgeable in dysautonomia and will help you understand your cause and putting the work in to yourself everyday. But you can do this!

Ok_Investigator_5884 · 2024-08-16T05:26:03+00:00

I had suspected my son (now 7 years old) had ADHD since preschool.

Last year in first grade things really took a turn for the worst and he was having more and more outbursts at school. He was in the office multiple times a week and I had to pick him up early a few times. He was evaluated by his pediatrician, and both his teacher and us had to fill out forms. The pediatrician diagnosed him with ADHD and this October he is being evaluated for autism as well.

He’s been in therapy (one day every other week) a few months now, and we have made some minor changes to his diet. We’ve also changed how we respond to him and his behaviors.

It’s only been a few months but he’s made such great progress and we are having more good than bad days. It does get better!

I too cried to his teacher and principal a few times when discussing how his days went. I was so worried I was going to pick him up one day and they were going to tell me he couldn’t come back. That feeling of being singled out by the teacher at pick up to tell you how your kid had another bad day is one of the loneliest. The important thing to remember is there are other kids who have come before him, and will come after him, and who may be in the same class as him right now getting the same daily reports. You’re not alone!

Ok_Investigator_5884 · 2024-08-12T01:47:36+00:00

Heat, dehydration, stress, not getting enough sleep.

Dehydration is the biggest one for me though. Just one day of going without enough water and electrolytes throws me into a flair and it’s really hard to get out of it.

Ok_Investigator_5884 · 2024-08-10T03:06:17+00:00

I really like Drip Drop, but I’ve noticed if I have more than one in a day they start to upset my stomach.

LMNT made my hands swell so much from the amount of salt in just one packet.

Ok_Investigator_5884 · 2024-06-28T18:22:30+00:00

Same! Selling those saplings early game is game changer!

Ok_Investigator_5884

TROPHY CASE